BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

Firestormm

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23 June 2014 from mecfsforums:
https://www.facebook.com/groups/newryandmourne.me.fms/permalink/319177798242547/
Joan Mcparland

Dear Mrs McParland,

Thank you for your email and please accept my apologies, on behalf of our organisation, for the upset this has understandably caused.

We pride ourselves on the service we provide to those battling with CFS in our region and share the concerns such speculation will have had amongst patients.

I would like to reassure you and your group that the matter is being taken extremely seriously by the Essex CFS Service and a full internal review has begun.

In the meantime, The BMJ have been contacted and asked to remove the post and any association with our service to it.


Kind regards
Noreen
Noreen Buckley
Head of Rehabilitation/Essex CFS Service Manager
Southend University Hospital NHS Foundation Trust
Prittlewell Chase I Westcliff-on-Sea I Essex I SS0 0RY
Tel: 01702 435555 ext 6696 I Email: noreen.buckley@southend.nhs.uk
Personal assistant/Secretary: Jill Butten ext 8646
Visit our website: www.southend.nhs.uk

-----Original Message-----
From: Joan McPARLAND
Sent: 20 June 2014 20:35
To: Buckley, Noreen
Cc: Martina Marks

Subject: BMJ ARTICLE

Dear Noreen Buckley

As a patient support group in Northern Ireland, we are dismayed and shocked to have read the recent BMJ article concerning M.E. patients. We have also taken into consideration your reply to Dr. Charles Shepherd, MEA.

You state the article does not reflect the opinions of the Essex CFS Service and was written by the authors as a purely hypothetical deliberation.

Although this is possibly an acceptable explanation we feel it will not undo the damage which has once again been fuelled by such an insensitively lead topic for discussion.

As a patient support group we see the unimaginable extent of the suffering, caused as a direct result of misinformation and disbelief, not only within the general population but also within the medical profession. We strongly feel this article has already done untold damage to medical professionals, Health Trust decision makers, benefit assessor's opinions and others who have read the content.

May we request a written public apology from the authors also for patients in Northern Ireland who are currently left without NHS Specialist services and who are fighting, with very limited energy resources, to get recognition, accurate diagnoses and the same respect awarded to other patients suffering from any chronic, physical diseases.

Surely clarification and information of the results of global bio-research would be a welcome addition to future BMJ articles and would offer hope to M.E. patients to counteract this latest damning onslaught? Patients have little else and this is evident and measurable by the high volume of desperate cries for help that we and other patient support groups in Northern Ireland are currently experiencing.

Regards

Mrs. Joan McParland
Voluntary co-ordinator
NEWRY & MOURNE ME/FIBROMYALGIA SUPPORT GROUP
 
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user9876

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As we were informed yesterday, the original post by Dr Collings and David Newton remains as a British Medical Journal Rapid Response (quite rightly so in my opinion), but it now states that their madness was expressed 'in a personal capacity'.
I think it is disappointing that the Essex service has managed to disassociate itself with they way its staff act. They have not specified the terms of the internal review I suspect from their earlier response it will be all about media handling and public statements. They need to look at staff attitudes and the way these affect patient care.
 

alex3619

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I'm sure that internal review will result in the guilty parties appropriately disciplining themselves ... NOT. :meh:
Internal reviews are usually strongly biased by self interest. It is not in the interest of any organization to implicate itself or other workers other than those already implicated. What might happen though is they will find that the authors were entirely responsible, and do something about that. There, problem solved, the Essex service is now pure and untainted!
 

alex3619

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I doubt they'll even do that much. The statements made by the manager in the past sound very much in line with the authors' views, and she probably has encouraged those views and even hired based upon them.
Well, I expect a public reprimand to be more considerate in the future at the very least. I am aware that internal reviews tend to lead to punishment that usually amounts to little more than a stern reprimand.
 
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I'm sure that internal review will result in the guilty parties appropriately disciplining themselves ... NOT. :meh:
I think that underestimates the bureaucratic force within the NHS - it has 60 years of HR practice that supports staffing relations in the biggest employer in Western Europe, once a process has started it doesn't easily stop. It's not clear from Noreen Buckley's letter whether 'full internal review' would lead to a disciplinary process but given how monumentally stupid Collings and Newton (or perhas just one of them) were in using the Trust's name, and the scale of embarrassment that has followed I'd say there's good grounds to expect someone to be identified as being 'responsible'. Given the nature of the fault I'd guess that the 'counselling option' in the action flow chart would be the most likely outcome - not what most people here would want but nicely ironic in the circumstances.

Since last year Hospital Trusts in England have a new audience to take note of, and that's the local commisioning groups. I'm unclear how the Southend Service is funded but I'd guess the six CGs that cover Essex have inherited contracts with the Service. Contact with the Commissioning Groups might be valuable in changing the focus of the Southend Service but this really needs to be led by local ME/CFS patients, there are a few groups in Essex, I think mostly affiliated to AfME. These groups would have the strongest voice with the Commissioning Groups although AfME and MEA might be listened to as well.

An aspect of the Southend Service is Dr Collings' apparent semi retired status, he is listed as part time only and seems to be past accepted NHS retirement age. Handled appropriately patients could develop a working relationship with the Hospital with the view to changing the focus of the service under new and more relevant leadership. Patients do have some leverage in this context - http://www.england.nhs.uk/ourwork/patients/ What would be unlikely to achieve change however would be anything that might be characterised as an unwarranted attacks on NHS staff, which would only lead to staff and managment closing ranks.
 
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My personal opinion is that no patient should ever have to endure treatment from a physician who has openly expressed contempt of their medical condition..


It must have taken some thought for a joint response to have been written. It is alarming that a GP who trains other GPs also apparently joined in the belittling of our neurological illness.
 
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My personal opinion is that no patient should ever have to endure treatment from a physician who has openly expressed contempt of their medical condition..
Few people would disagree with the principle but there's no point in having unreasonable expectations where wrongful dismissal claims could cost the NHS £100ks, and where staff would resist change where a witch hunt was perceived. There is also an issue of consultant level recruitment which makes staffing changes a consistent challenge for managers.
It must have taken some thought for a joint response to have been written. It is alarming that a GP who trains other GPs also apparently joined in the belittling of our neurological illness.
The RR to BMJ was so nuts it's difficult to understand what effort or by who, was actualy involved. It's not unknown for some twit to post something in joint names based on cursory discussions - however Collings whose background is in gerontology does have some fairly unhelpful long standing misperceptions of M.E http://www.echo-news.co.uk/news/8182311.Clinic_helps_people_like_Margaret_cope_with_ME/

Dr Collings said the condition – which typically affects high achievers and people with obsessional personalities – is still stigmatised

As far as the additional comments by the GP from south Wales - I read those as being irony aimed at Collins and Newton. This certainly made me laugh:

Presumably those cases transmitted by Anthony Collings "MeMe" constitute the homozygous form ?
 
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Sasha

Fine, thank you
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Few people would disagree with the principle but there's no point in having unreasonable expectations where wrongful dismissal claims could cost the NHS £100ks, and where staff would resist change where a witch hunt was perceived. There is also an issue of consultant level recruitment which makes staffing changes a consistent challenge for managers.
Would these guys getting the boot be an unreasonable expectation if we were talking about MS? I doubt it. I realise you're pointing out the likely realities, though, not approving of the situation.

The RR to BMJ was so nuts it's difficult to understand what effort or by who, was actualy involved.
I don't see a difficulty here - the effort was on the part of the two who wrote it, surely?

It's not unknown for some twit to post something in joint names based on cursory discussions
But no-one puts someone else's name down as a co-author without their permission.

Dr Collings said the condition – which typically affects high achievers and people with obsessional personalities – is still stigmatised
Argh! So he stigmatises it by association with these qualities and then points out it's stigmatised. What a prince. :bang-head:

As far as the additional comments by the GP from south Wales - I read those as being irony aimed at Collins and Newton.
I read them as agreeing with Collings and Newton, with the implication that patients are self-obsessed and it's "all about ME".
 

Firestormm

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Action for ME's comment is up:
http://www.bmj.com/content/329/7472/928/rr/702841

A very helpful comment in my opinion.
Yes I agree. It was very good I thought.

Sonya Chowdhury, Chief Executive Action for M.E., 42 Temple Street, Keynsham BS31 1EH

24 June 2014


Not only ludicrous, but insulting too

I find it very hard to believe that professionals who claim to have an interest in M.E. could hold such frankly ludicrous views as those purporting to be from Dr Anthony Collings and GP L Sam Lewis.

To claim that CFS/M.E. is “an ordered entity arising from a disordered combination of psychological, memeological, social and behavioural factors” insults not only the thousands struggling with this organic disease but also the professionals working so hard to advance our knowledge of it.

Perhaps Drs Collings and Lewis would like to discuss the breathtakingly ignorant notion that CFS/M.E. is “a meme, a dysfunctional culturally-transmitted idea-infection” with some of these professionals. I’m sure Prof Hugh Perry, Professor of Experimental Neuropathology for Biological Sciences, or Prof Stephen Holgate, Clinical Professor of Immunopharmacology, would be willing. Both are members of the UK CFS/M.E. Research Collaborative, holding its first annual conference this September.

I can only hope that people with M.E. do not assume such potentially dangerous ideas to be universally held by UK healthcare professionals – there are plenty of others out there capable of treating patients with the respect they deserve.
 

SOC

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Essex CFS Service seems to have completely missed the point.

They apologize that such things were said publicly. They are not apologizing that they have allowed physicians with such ill-informed and insulting beliefs to treat ME/CFS patients. There is nothing that suggests that Essex CFS Service is shocked at the beliefs of their doctors about their patients, or that those doctors, and others with similar beliefs, will no longer be treating ME/CFS patients at their clinic. They are sorry that patients are concerned, not that their physicians would think such ill-informed and unkind things.

The BMJ have been contacted and asked to remove the post and any association with our service to it.
I note, with a certain grim humor, that they are as concerned that other posters made the connection between these doctors and Essex CFS Services as they are that the doctors posted such offensive material in the first place. Apparently patients of Essex CFS Service are not supposed to know what their doctors believe about their illness. Apparently Essex CFS Service does not have the same concern that they do not employ doctors with such beliefs about ME/CFS patients in the first place. :rolleyes:

Not only was the original BMJ RR post disgusting, the statements by the Essex CFS Service are clueless, self-serving, and insulting.
 

rosie26

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This clinic is not fit for ME/CFS sufferers. It is obvious that they do not understand our illness.

Will they slap themselves with a wet bus ticket ? They have made a huge error here and have exposed their wrong attitude and lack of understanding of the serious crippling effects of our illness.
 
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Roy S

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There are some very good responses from 2004 to the original editorial content. How little some things have changed in the last decade.
@Tom Kindlon wrote:
 
Dr. White's views far from universally held by those working in the field
24 October 2004
 
 
 
While Peter White is perfectly entitled to his own views on chronic fatigue syndrome (CFS) and propose his own models for the condition, (as in this case where he writes about a speculative theory involving interoception), an analysis of the BMJ's reporting of the illness over the years would suggest that readers of the BMJ are disproportionately "exposed" to articles portraying CFS as a primarily psychiatric condition or at least one that will readily respond to graded exercise therapy and cognitive behaviour therapy.
 
Here are the results from a quick search of the BMJ archives:
 
Editorials in the BMJ on chronic fatigue syndrome since the start of 1994 (that's how far online searches go back)
EDITORIALS: S M Lawrie (psychiatrist) and A J Pelosi (psychiatrist) Chronic fatigue syndrome: prevalence and outcome BMJ, Mar 1994; 308: 732 - 733.
EDITORIALS: Stephen E Straus (appears to have similar views to the psychiatrists about CFS) Chronic fatigue syndrome BMJ, Oct 1996; 313: 831 - 832.
EDITORIALS: Harvey Marcovitch (Consultant paediatrician who appears to have similar views to the psychiatrists about CFS) Managing chronic fatigue syndrome in children BMJ, Jun 1997; 314: 1635.
EDITORIALS: Michael Sharpe (psychiatrist) and Simon Wessely (psychiatrist) Putting the rest cure to rest again BMJ, Mar 1998; 316: 796 - 800.
EDITORIALS: Stephen E Straus (see above) Caring for patients with chronic fatigue syndrome BMJ, Jan 2002; 324: 124 - 125.
EDITORIALS: Peter D White (psychiatrist) What causes chronic fatigue syndrome? BMJ, Oct 2004; 329: 928 - 929.
Breakdown of those who wrote editorials: 5 psychiatrists with 2 others expressing views which would be inline with the psychiatrists' views of CFS.
Classification by the World Health Organisation of ME and CFS: neurological! (ICD-10; G93;3).
These are just the result of editorials. If one does a general search for "Chronic Fatigue Syndrome", apart from the letters, the vast majority of articles in the BMJ on CFS appear to be either written by psychiatrists or those who hold similar views to the psychiatrists on CFS.
There has just been a major conference on CFS in the US. Various researchers presented all sorts of interesting studies, many of which would appear not be compatible with the views expressed in this editorial or indeed with the other editorials mentioned above. A summary of this conference can be found at: <<http://www.wicfs->/> me.org/Pdf%20Files/AACFS%202004%20Report.pdf
More detailed information will be available to be bought in time from the AACFS (American Association for CFS) website www.aacfs.org <http://www.aacfs.org/> <<http://www.aacfs.org>/> . The AACFS is an organisation for clinicians, research investigators and healthcare providers rather than a patient organisation.
Unfortunately because of the shortage of funds to do research in the area, many of these studies never get replicated.
I hope the new editor of the BMJ will reflect on these statistics and the readers of the BMJ will be reading an alternative point of view on CFS in the future.

<http://www.bmj.com/rapid-response/2...ews-far-universally-held-those-working-field>
 
As has been said the United States and the United Kingdom are separated by a common language. In American this is not just bias. It's prejudice and its effects are ugly.
 
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Esther12

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They apologize that such things were said publicly. They are not apologizing that they have allowed physicians with such ill-informed and insulting beliefs to treat ME/CFS patients. There is nothing that suggests that Essex CFS Service is shocked at the beliefs of their doctors about their patients, or that those doctors, and others with similar beliefs, will no longer be treating ME/CFS patients at their clinic. They are sorry that patients are concerned, not that their physicians would think such ill-informed and unkind things.
Also, I think this reflects the extent to which many practitioners at ME/CFS centres do not recognise the way in which the results from PACE were spun. If you tell a group of people that they are much more successful than they really are, then of course this is going to lead to all manner of other distortions of thought.

If the Essex CFS service were to really engage in a serious attempt to understand what has happened here, I think it would have to lead to them calling for the full release of the PACE trial's protocol defined outcome measures, so that they, as well as patients, could have a better understanding of the value of their work.
 
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Firestormm

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In an organisation (any organisation) how do you deal with 'free speech'? Should it be prevented? Should those within the organisation not be permitted to share their thoughts - even irrational seeming ones - publicly? Difficult sometimes - what do you do when you come up against those who don't share your opinion or view of things but who are working for the same goals: which presumably they must be as part of - in this case - the Essex CFS/ME Service e.g. 'helping patients' etc.

Not that I don't think Dr Collings and David Newton, and Sam Lewis, shouldn't have their expressed thoughts investigated or that there shouldn't be an internal review with representatives of patient support groups/national charities taking part.

Such thoughts were bound to reflect poorly on the Service itself and it was naive of the authors to think - assuming they did - that posting such thoughts as representatives of a CFS/ME Service would not create such a situation as we now find ourselves.

Personally, it was for me the nature of the thinking that stuck in my craw. This whole 'meme' nonsense and the simple fact that despite having worked among CFS/ME patients in Essex the only time we heard from Dr Collings - the lead consultant physician - is about 'Meme-theory'. Talk about insulting. But is it still an example of 'free speech'?

I wonder at the extent to which Essex and the Hospital can censor or discipline. I hope that they can. I hope that they do. But I guess we will have to wait and see.

Anyone is able to reply to the BMJ or write to a newspaper or express their opinion about anything online in a forum - perhaps such as this - be there layperson or medical professional. At what point does 'free speech' become something at odds with the organisation you work for/represent and something you can/should be disciplined about?

Rhetorical questions. I am just in that kind of mood this morning.